BUFFALO, N.Y. – You’re waiting to hear the results
of your annual mammogram when the technician tells you to get
dressed and go back to the waiting room: The radiologist wishes to
speak with you.

More than 200,000 women will get a version of that message this
year when they find out they have breast cancer. They will have to
decide where to seek treatment and wait for an appointment. This
appointment will be the first of many conversations about their
diagnosis and choices for treatment within the upcoming weeks. Few
women, however, will have a talk with a health care professional
about their emotional health needs.

What women haven’t had is a place to which they can turn
in the initial days after diagnosis for research-based information
focused on the thoughts and emotional concerns important to them as
they deal with being a person newly diagnosed with cancer—a
place that is personalized, private and allows them to consume the
information at their own speed.

Until now.

Robin Lally, PhD, RN, assistant professor of nursing, has
developed CaringGuidance™: After Breast Cancer Diagnosis, an
Internet-based, self-guided and tailored psychoeducational program
for women newly diagnosed with breast cancer.

“Right now, we are recruiting women to participate in a
pilot clinical trial to learn how women will utilize the program
and its effectiveness,” says Lally.

Lally, who developed her program with an American Cancer Society
Mentored Research Scholar Grant she received in 2011, has devoted
her career to understanding how women adjust to breast cancer.

“My work focuses on the stressful period just following
receipt of a breast cancer diagnosis,” she says. “Since
many women receive their diagnosis from a mammography center or
their general practitioner and then must identify a clinic and wait
to see a breast surgeon, they are often left alone to deal with
their anxiety. Through this program, we hope to intervene during
this critical time by addressing coping and adjustment needs
early.”

Caringguidance.org, the Internet-based system she has developed,
has distinct advantages for delivering the information these
patients may need. An Internet-based format will allow women to be
reached as soon as possible after a diagnosis, Lally says. It also
allows the patient to control the rate at which she acquaints
herself with the diagnosis and related information. The patient
receives the information in private and in a consistent, tailored
and repeatable way, in a manner that supports her emotional
well-being. The information is also delivered in a nonjudgmental
way.

Questions about to whom and how women reveal information about
the diagnosis are extremely important to women, says Lally. The
program includes information for women on how to have conversations
about their diagnoses—conversations they may find
difficult—with spouses, family, friends and even
supervisors.”

A unique aspect of the program is that the topic areas covered
were determined based on questions expressed by newly diagnosed
women whom Lally had interviewed as part of previous research.
These questions include “Are my reactions normal?”
“What does my diagnosis mean?” “Who am I
now?” and “What are the strategies to care for
myself?”

She says that CaringGuidance™: After Breast Cancer
Diagnosis also is unique because it is the only Internet program of
which she is aware that focuses on:

Psychological concerns

Early prevention of psychological adjustment problems rather
than management during or after treatment

Cultural responsiveness to needs of African-American, as well
as Caucasian women

Lally plans to enroll 80 newly diagnosed women (40 intervention
and 40 control) in the pilot study. That study will run for
approximately a year and a half with help from Roswell Park Cancer
Institute, Windsong Radiology Breast Care Center and other
organizations that have agreed to distribute information and flyers
about the study.

She also is collaborating with UB’s Center for
Computational Research, which will provide software engineering
support and hosting and security for CaringGuidance™ and with
OtherWisz Creative Corporation in Elmwood, N.Y., for design and
programming.

Future plans include the addition of a learning module for
family and friends who support women with newly diagnosed breast
cancer. Lally was awarded grants from the New York Cancer Research
Fund and the Foundation of New York State Nurses to develop that
module.

Women recently diagnosed with early stage breast cancer who are
interested in learning whether they are eligible to participate in
the clinical trial of CaringGuidance™ After Breast Cancer
Diagnosis should contact Lally at rmlally@buffalo.edu or
716-829-2137.

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